For parents of special-needs children, religious education can too often become one more confusing red-tape maze they need to navigate.

Many parishes simply don’t have special religious education programs in place or don’t have knowledge of — or access to — the necessary resources. Others take the view that special-needs children don’t need catechesis or the sacraments because by their very nature they are without guile and, therefore, heaven-bound without any outside assistance. And still others don’t advertise that adaptive programs are available and so parents assume the door is closed to their special-needs child.

Although things are changing rapidly as society in general — and the Church in particular — learns how to better serve people with disabilities, faith formation can be an exercise in frustration for already overwhelmed parents who are forced to advocate on their child’s behalf at every turn. The solution, experts say, is fairly simple: Welcome everyone, and create a network that will connect parents to parish, parish to diocese, and diocese to national support structures. But putting that straightforward plan into practice isn’t that simple, since every special-needs child requires an individualized program that addresses his or her specific disabilities and learning style.

“Many of these parents have been told that their child is an angel and that they don’t need things like sacraments,” said Nancy Thompson, director of programs and diocesan relations for the Washington, D.C.-based National Catholic Partnership on Disability (NCPD). “They are human beings, not angels. ... People with disabilities desperately need the sacraments, too, to be able to live the lives in front of them.”

One in six

Thompson, whose adult son, Larry, has multiple disabilities, knows from personal experience that special-needs children and adults not only have a need for ­­— and a right to — the sacraments but to lifelong faith formation and to full participation in the life of their parish and the larger Church as well. Awareness is the most critical issue, she said. It’s not uncommon for a parish to say they don’t even have any people with disabilities among its population.

“Based on statistics and looking at how those statistics apply to the numbers that we know are Catholic, in any parish about 20 percent of the people have some kind of disabling condition, and if you don’t see them, then why not?” Thompson asked, noting that although some disabilities are “invisible,” most are not.

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“Where are these other people? Can they even get in the door of the church, or are they at the Methodist church down the street because they provide services?” she asked. “What are parishes doing to be proactive with couples, new parents? Do they ever talk about ‘What if you have a child with a disability?’ Disability is a theme that runs through every area of ministry the Church has — marriage prep, education, social justice, service. ... What do we need to be doing to make sure that the gifts (of disabled people) are being accessed so they can be full members of the Church? The idea that they don’t exist is an uninformed conclusion.”

According to the Centers for Disease Control (CDC), one in six children has one or more developmental disabilities or developmental delays. According to the CDC, developmental disabilities are defined as “a group of conditions due to an impairment in physical, learning, language or behavior areas,” which begin during development and may affect daily functioning throughout a person’s lifetime. Autism is the disability whose numbers are increasing exponentially.

Advocates

Once you get past the issue of awareness, special religious education is not exactly smooth sailing. Ever since the U.S. bishops issued their 1978 Pastoral Statement on People with Disabilities, the Church has been called and challenged to evangelize and catechize those with disabilities in a way that fully integrates them into the life of their parish. But it can require a tremendous amount of time and effort to put together individualized programs and train catechists, and so it often falls by the wayside or onto the shoulders of parents.

Thompson

“Accessing services in a parish that has not had them before can be difficult. Somehow that has to get started and usually that means the parent has to advocate for it,” Thompson said, explaining that for parents who are already advocating on multiple fronts, such as health and education, it can be overwhelming to have to be an advocate within their own parish as well.

Thompson told Our Sunday Visitor that many places across the United States have programs that make a difference for people with disabilities. Those who do it best, she said, have a successful “equation” in place — typically a support system on a diocesan level to inform parish leaders and provide awareness and training. Or, if the equation moves in the opposite direction — such as a parent approaching a parish for help — that parish staff knows where and whom to contact to get the needed resources.

“People want to respond; they just might not know how,” Thompson said. NCPD attempts to fill that void by working with dioceses and parishes to create a “stream of awareness” of resources that can be used on a local level. Also, they work with publishers to create “adaptive” materials that transform traditional religious education resources into specialized programs to meet particular needs and styles.

Adaptation

Loyola Press in Chicago has developed three sacramental preparation kits in collaboration with NCPD. Children with autism and other special needs are able to use things like a specially adapted “toss-and-tell” ball to foster communication, puzzles to better understand the meaning of Eucharist or an examination of conscience card to help them prepare for reconciliation.

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“There has been a hunger for materials,” said Maria Mondragon, managing editor for curricula development at Loyola. Although people have been making “good, functional materials” on their own for years, she said Loyola was hearing again and again that more professional materials desperately were needed.

“We have taken the core requirements of the USCCB guidelines for sacramental preparation for persons with disabilities and have figured out ways to make them achievable for kids with disabilities from different learning styles. ‘Adaptive’ is the key word,” Mondragon told OSV. Every kit is visual, interactive and kinesthetic.

“We try to approach it from as many different perspectives as possible,” she said, explaining that a puzzle in the First Communion kit helps teach children to understand the difference between Eucharist and regular food. “We start with their strengths and build on their strengths. See what the child can do. ... The approach works with every child, not just children with disabilities.”

Loyola is now developing an entire adaptive curriculum aligned with “Finding God,” its main Ignatian-focused religious education curriculum. The adaptive program will be available in mid-November and will include things like an interactive piece on praying the Rosary that will have students stringing prayer cards as they learn the prayers and mysteries, turning the action itself into a prayer.

“Every concept is boiled down to its essence. It was very powerful to work on it,” Mondragon said of the new adaptive curriculum, adding that it comes down to an awareness that “every child can learn, every child can pray, every child can find God.”

For those with hearing impairments, Our Sunday Visitor offers a pair of resources to help with their spiritual formation. “Liturgical Prayers in American Sign Language” (OSV, $14.95) is a comprehensive video to help teach prayers such as the Our Father, the Lamb of God and the Gloria, among others. “Strengthened in Faith: Confirmation” (OSV, $75) is a comprehensive study program from OSV and the National Catholic Office for the Deaf that contains 12 video lessons on three DVDs that help walk confirmands through the sacrament.

Finding help

Colleen Touchette is more than aware of that beautiful reality. As diocesan administrator of Special Religious Development (SPRED) for the Diocese of Providence, R.I., she has seen the powerful way children and adults with intellectual and developmental disabilities can grow in faith when parishes provide appropriate programs to meet their needs.

SPRED focuses on small faith communities as a way to nourish the spiritual lives of special-needs children and their families. These small groups not only provide faith formation but spiritual friendships and a network of support that carries families forward long term.

“Parents want religious education for all their children and will begin searching for a program that will meet their child’s special needs,” Touchette told OSV, adding that too often what parents find is a “watered down” version of the traditional parish religious education program, which may not be effective or even theologically sound.

SPRED uses a “symbolic-liturgical catechesis” called Vivre that is not a teaching model based on information but rather “an intuitive model grounded on relationships and the use of symbol and a series of evocations,” she explained.

These evocations might include a particular environment for learning, music and color, silence or the use of simple words or pictures, even touch and smell — anything that can help a special-needs child make a connection to an element of faith.

Sister Mary Therese Harrington, S.H., one of the original founders of SPRED, which was first established in Chicago in 1966, said special-needs children may not relate to books or typical faith formation programs because they cannot read or interact with other children. Enter the SPRED approach.

“Best practices include small groupings, little reliance on books for the children, physical activity, time for concentrated focus and support for relationships,” she said. “As for the sacraments of reconciliation and first Communion, they should be taken one at a time over several years. First Communion comes first. There has to be a bond before it gets messed up and requires reconciliation.”

Sister Mary Therese suggested having both sacraments in a public and parish setting, making them as inclusive for special needs children as possible, and using activities like baking bread and tasting wine to prepare the children ahead of time.

“Give Communion to the parents first during the liturgy to put the child at ease. For reconciliation, include the family in whatever form of the sacrament is used,” she said. “In both cases, take a lot of time with the parish priest to make sure he is familiar with the child and with the family.”

Training key

What is often missing in parish programs is the “proper pace” for communication, Sister Mary Therese warned. Speaking loudly isn’t the answer, but rather speaking clearly and with “a peaceful pace.”

By the Numbers

According to statistics from the Centers for Disease Control, 1 in 6 children in the U.S. are diagnosed with developmental disabilities. Here are the ratios of children affected:

Attention deficit/hyperactivity disorder: 1 in 10

Autism spectrum disorder: 1 in 88

Cerebral palsy: 1 in 323

Down syndrome: 1 in 691

Moderate to profound hearing loss: 1 in 500

“It is key to the training of specialized catechists that they observe very fine catechists either through one-way viewing mirrors or being very still in a group. Catechesis is an art form,” she added.

Nancy Thompson of NCPD agrees that catechist training is often the missing piece in special religious education programs, something parishes and dioceses may consider too time- and labor-intensive to pursue. She remains hopeful, however, as new programs are developed. In particular, the Institute for Pastoral Initiatives of the University of Dayton is testing a level-one certification program for catechists with a focus on special-needs religious education. That virtual learning community will eventually give participating dioceses and parishes from around the country a way to access necessary training and resources. In addition, NCPD tries to fill the information void by offering seminars through its website.

“Easy access to that kind of information is something we are always trying to overcome,” she said, noting that special religious education presents unique challenges as catechists need to address very different disabilities — visual, intellectual, autistic. “There are many things you need to take into consideration to maximize the faith formation experience.”

‘They love it’

When Father Norman W. Bourdon became pastor of St. Joan of Arc parish in Cumberland, R.I., 23 years ago, the SPRED program was already up and running. SPRED was established, he said, because “children and adults with special needs were being neglected, probably because in general people thought they could not pray, express or learn their faith.”

Father Bourdon said his special needs parishioners are woven into the church community and are not outside it. Rather than divide his parish, SPRED has knitted it more closely together, with many people attracted to the program as catechists and helpers. When special liturgies are held, parishioners appreciate the different styles of prayer expression they witness.

“One of the greatest challenges is to get people to be part of the program. It seems once they do, they never leave. They love it, and the ‘special friends’ more than appreciate it,” Father Bourdon told OSV. “Many people feel that to volunteer in the SPRED program, they need special qualifications. You only have to be willing and the rest will fall in place.”

Once a year, St. Joan of Arc hosts a training session for SPRED volunteers from that parish and beyond. It provides catechists and other volunteers with the basic information they need to serve the special-needs community. Although it does require a time commitment, Father Bourdon admitted, once people get involved, they realize it is more than worth the effort.

“Anyone who first comes to SPRED doesn’t realize how happy, beautiful, appreciative and responsive these people are. They instantly melt away any concerns you might have about not being adequate to be in the SPRED program,” Father Bourdon explained. “It is important to the families of people in SPRED to know that the Church cares about and helps them as they deal with children and adults with special needs.”

Thompson of NCPD added that parishes need to remember that special religious education is not only about reception of the sacraments or limited to childhood.

“There are a lot of years that do not involve the sacraments, and all children need that whether they are disabled or not, and then they need lifelong faith formation,” she said, noting that even marriage preparation programs can provide adaptive materials for couples with special needs.

“We are thinking of all the sacraments” — including marriage and holy orders, she said. “We need to see if special-needs children and adults are going to be able to realize what they see as a calling to a particular way of life.”

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